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Nonprofit Overview

Causes: Digestive Diseases & Disorders, Health, Lung Diseases

Mission: As an organization operated entirely by adults with CF who volunteer their time, our mission is to provide a source of information and education for adults with CF regarding the basis, nature and progression of CF, the latest treatments and research, and to assist in the psychosocial aspects of coping on a day-to-day basis. This is accomplished by publishing a free, quarterly newsletter called CF Roundtable, and through our website and social media sites.

Results: The US Adult Cystic Fibrosis Association now has over 3000 subscribers to the CF Roundtable newsletter, website and our social media platforms such as Twitter, CF Roundtable FB, CF Connect FB and LinkedIn. CF Roundtable newsletter is available in print (snail mail), by email (PDF) or online through our website when a person subscribes. Anyone can subscribe to learn more about CF and its effects on adults with CF and their families.

Target demographics: Adults with Cystic Fibrosis

Direct beneficiaries per year: Over 3000 subscribers and 13 college students with scholarships.

Geographic areas served: the United States with individuals and organizations within the CF Community

Programs: 1. CF Roundtable, our national quarterly newsletter available for free in print or online via our website, www.cfroundtable.com. 2. Website blog, resources, links to Facebook, Twitter and LinkedIn.

Community Stories

96 Stories from Volunteers, Donors & Supporters

Jennifer641

Board Member

Rating: 5

I've been reading the CF Roundtable, published by USACFA, throughout my adulthood (I think I received my first newsletter in college, I've been in my professional career over fifteen years) -and always learned something from it. The content is a balance of practical work/life and up to date treatment information relevant to the cystic fibrosis community. The outreach over the years has only grown and expanded - through social media and other outlets to continue to offer content accessible, and free, to both subscribers and the public in whatever format they opt. With so much going on in the adult CF community, it is great to have the CF Roundtable put everything together in one place.

1

Board Member

Rating: 5

USACFA has made a difference in so many lives of those living with CF over the years. I began reading the newsletter about 15 years ago and I always learn something new. Besides informing their readers of clinical advancements and clinical trials, they also address the emotional impact of CF. So often this aspect of CF gets overlooked. Reading articles written by adults with CF who have walked the same path as you provides support that is so difficult to come by in a rare disease community, especially given the isolating effects of strict infection control policies. I'm so proud to be a part of this organization!

1

Volunteer

Rating: 5

As a volunteer for the US Adult CF Assn and an avid reader of their newsletter, Cf Roundtable, I feel they offer the CF community support, inspiration and an environment to share experiences. Living with cystic fibrosis can be isolating and lonely but being part of this organization helps me feel part of a big family who cares. I am happy to see them grow and gather more readers who then become writers.

1

Board Member

Rating: 5

USACFA (publisher of CF Roundtable) has always been a beacon of advocacy in the CF community. Their publication covers many avenues of living with CF, and always offers a well-organized, thought-provoking, and optimistic tone for the reader. So thankful for all that they do, and I'm honored to work with such a passionate group of people.

1

Board Member

Rating: 5

As an adult with cystic fibrosis, CF can be an isolating disease. CF patients are not allowed physical contact with each other and the CF Roundtable provides a critical outlet for patients where we can connect and share experiences and knowledge. The publication is diverse and addresses a wide variety of issues within the CF community, including social and financial challenges, seeking higher education, working, traveling and clinical innovations. There really is no comparable publication in the CF community!

1

Board Member

Rating: 5

I have been reading CF Roundtable for many years and am proud to now be a part of the organization. It is a great resource for those with CF to learn about studies and exciting news in the CF world. But it is also a great way to connect with other CF adults and their stories, via the quarterly newsletter and online on the CFR blog. I highly recommend this organization for anyone with CF.

1 Ella B.

Board Member

Rating: 5

USACFA (CF Roundtable) is an amazing organization that I have become a part of in the past year. Fellow directors are some of the most dedicated, inspirational, driven, and intelligent people with CF I know. This publication has allowed me to share personal experiences and struggles of living with CF as well as learning an incredible amount from reading other's stories as well finding out about new research on the horizon for CF patients. USACFA and CF Roundtable has helped me connect to the CF community in a way I never thought I could and I am so thankful and delighted to be a part of this organization!

1

Client Served

Rating: 5

CF Roundtable, produced by USACFA, is an invaluable resource for anyone dealing with CF, whether it be patient, caregiver, or medical professional. CF Roundtable provides first hand accounts of what it’s like to actually live with CF and is also a fine source of information and research. CF Roundtable is inspirational, to say the least, as are the volunteers who produce it.

Previous Stories
2

Client Served

Rating: 5

CF Roundtable is one of the most valuable resources currently available for adults with CF as well as caregivers of those with CF. It provides a unique perspective of living with the disease as well as practical information and research. Given the fact that it is produced by volunteers who all have CF makes it particularly remarkable. Kudos to those who do such a fine job of keeping the CF community so well-informed and so connected.

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1

Professional with expertise in this field

Rating: 5

As a 52 year old with, I have been reading, enjoying and benefiting from the roundtable for about a year. It is an important resource for people with CF, parents and family members, providing information about scientific developments in easy to understand language. Thanks to all the people working on this.

1 Dawn133

General Member of the Public

Rating: 5

As a 49 yo CFer, I have been reading, enjoying and benefiting from the Roundtable since its inception many moons ago. It is an important resource for people with CF, parents and family members, providing information about scientific developments in real-speak, a column highlighting studies and news related to CF, ideas and stories written by USACFA members and guest writers on how not only to live with CF, but thrive. It has done a great job keeping up with the exciting and dramatic developments in medication and treatments. Roundtable is a critical tool for a small community, bringing us together and keeping us informed, inspired and hopeful. A treasure kept alive by incredibly dedicated people for whom I am very thankful!